“This is like running a marathon,” my specialist said, as I left my appointment for the 5 hour drive back home. And he was right. Traveling with a chronic illness is no small feat.
Due to the severity of my illness, I am mostly homebound and rarely leave for anything besides a medical appointment. When I do make a medical trip, it takes much planning in advance and is taxing on my low energy levels. Still here are some tips that make traveling possible.
Don't make any major treatment changes before traveling. Because many treatments make me feel worse initially, I avoid making any major changes to my protocol for at least a week before traveling so I am as stable as possible.
Don't do all the travel in one day. My parents and I always leave the day before my appointment and sleep overnight so the trip is less exhausting and so we are fresher for the doctor. We then drive home the day of the appointment.
Get as comfortable as possible in the car. Often, I’ll sit in the passenger seat opposed to a back seat so I have more leg space and can recline. I wear light colored clothing to stay cooler, use a small pillow for my back, and wear sunglasses to prevent headaches from the direct sunlight. When I was extremely light and sound sensitive, I wore a sleep mask, earplugs, and earmuffs to block out as much light and noise as possible.
Pack all necessary medical supplies and assistive devices. I bring all my regular medication and supplements, dose my cortisol medication at higher amounts to cope with the stress of traveling, and pack “emergency remedies”--ginger tea for nausea, TriOral Electrolyte Powder for dehydration, and Alka-Seltzer Gold for herxing. I bring ice packs, as I often run fevers. In the past, I have even packed my own bedding and an air purifier to run in our hotel room, as I was at risk for severe reactions to even the scent of dryer sheets. When I was extremely weak, I used my wheelchair.
Plan and cook meals in advance. Both my mom and I have very restrictive diets, there’s no such thing as a “cheat day” for us, and we cannot eat in restaurants. Before any trip, my mom creates a menu, and the day before we leave, she spends hours in the kitchen steaming vegetables, preparing meat, making hard-boiled eggs, cooking gluten-free grains, etc. She then packs the food into dishes labeled for each meal and loads them into a cooler. In the past, she also had to puree my food before packing it due to my severe digestive issues.
Bring plenty of water and snacks. I'm always tired, and I try not to add to my fatigue with dehydration or blood sugar crashes. Often, I'll snack on nuts, apples, and raw vegetables.
Flying with a chronic illness is more challenging, but it can be done, as my family proved in 2014, when we traveled to the Grand Canyon. At this time, I was still generally healthy and only had to avoid sugar, but my mom was on a very restrictive diet due to her autoimmune illness.
Before we left for our trip, we planned a menu for each of the four days we were vacationing and created a list of groceries that accommodated my mom’s diet to buy once we got off our flight. Of course, we needed a way to cook, so we packed my dad's bag with a George Foreman Grill, an electric hotplate, jumper cables, and an inverter so that we could cook off the battery of our rental car.
Due to the severity of my illness, I am mostly homebound and rarely leave for anything besides a medical appointment. When I do make a medical trip, it takes much planning in advance and is taxing on my low energy levels. Still here are some tips that make traveling possible.
Don't make any major treatment changes before traveling. Because many treatments make me feel worse initially, I avoid making any major changes to my protocol for at least a week before traveling so I am as stable as possible.
Don't do all the travel in one day. My parents and I always leave the day before my appointment and sleep overnight so the trip is less exhausting and so we are fresher for the doctor. We then drive home the day of the appointment.
Get as comfortable as possible in the car. Often, I’ll sit in the passenger seat opposed to a back seat so I have more leg space and can recline. I wear light colored clothing to stay cooler, use a small pillow for my back, and wear sunglasses to prevent headaches from the direct sunlight. When I was extremely light and sound sensitive, I wore a sleep mask, earplugs, and earmuffs to block out as much light and noise as possible.
Pack all necessary medical supplies and assistive devices. I bring all my regular medication and supplements, dose my cortisol medication at higher amounts to cope with the stress of traveling, and pack “emergency remedies”--ginger tea for nausea, TriOral Electrolyte Powder for dehydration, and Alka-Seltzer Gold for herxing. I bring ice packs, as I often run fevers. In the past, I have even packed my own bedding and an air purifier to run in our hotel room, as I was at risk for severe reactions to even the scent of dryer sheets. When I was extremely weak, I used my wheelchair.
Plan and cook meals in advance. Both my mom and I have very restrictive diets, there’s no such thing as a “cheat day” for us, and we cannot eat in restaurants. Before any trip, my mom creates a menu, and the day before we leave, she spends hours in the kitchen steaming vegetables, preparing meat, making hard-boiled eggs, cooking gluten-free grains, etc. She then packs the food into dishes labeled for each meal and loads them into a cooler. In the past, she also had to puree my food before packing it due to my severe digestive issues.
Bring plenty of water and snacks. I'm always tired, and I try not to add to my fatigue with dehydration or blood sugar crashes. Often, I'll snack on nuts, apples, and raw vegetables.
Flying with a chronic illness is more challenging, but it can be done, as my family proved in 2014, when we traveled to the Grand Canyon. At this time, I was still generally healthy and only had to avoid sugar, but my mom was on a very restrictive diet due to her autoimmune illness.
Before we left for our trip, we planned a menu for each of the four days we were vacationing and created a list of groceries that accommodated my mom’s diet to buy once we got off our flight. Of course, we needed a way to cook, so we packed my dad's bag with a George Foreman Grill, an electric hotplate, jumper cables, and an inverter so that we could cook off the battery of our rental car.
Finally, "go with the flow." On that Grand Canyon trip, airport security made my dad unload his bag, as all his gear looked suspicious, and he had to show his driver's licence a second time. We had to really "go with the flow" when we got off our flight, and Dad realized his driver's licence was still with the TSA agent. How would we get our rental car? How would Dad fly home without his driver's licence, which served as his photo ID?
Ended up we registered the car in Mom's name. Flying home was a bit more tricky. We had been assured by the airport that if Dad just showed his credit cards, they'd let him through security, but you guessed it, that didn't work. Dad was held up at the gate, emptying his wallet and searching for identification with either his address or Social Security number. Just as the TSA agent was telling my family to fly home without him, Dad pulled out an old Red Cross card that had his Social Security number, and he was "saved by the blood!"
So there you have my tips. Traveling with a chronic illness is difficult, but it can be accomplished.
Ended up we registered the car in Mom's name. Flying home was a bit more tricky. We had been assured by the airport that if Dad just showed his credit cards, they'd let him through security, but you guessed it, that didn't work. Dad was held up at the gate, emptying his wallet and searching for identification with either his address or Social Security number. Just as the TSA agent was telling my family to fly home without him, Dad pulled out an old Red Cross card that had his Social Security number, and he was "saved by the blood!"
So there you have my tips. Traveling with a chronic illness is difficult, but it can be accomplished.